The meaning of pain

The other night I started to have extreme pain in my abdomen. I couldn’t find a comfortable sitting or lying position and walking was out of the question. I knew that I was not having labor contractions because those are short-lived and I was experiencing near-constant pain. I started to wonder if the pain meant something terrible was happening in my uterus, for example, if my placenta was becoming detached. And then I decided to clear my mind of what the pain could “mean” and to really focus on my body.

With mindful attention, I felt that the pain was not in my uterus, it seemed to be behind my uterus. I decided to experiment with more positions, including some Yoga poses. When I went on my hands and knees, I felt immediate relief, and then the cause of the pain was clear to me. A lot of gas was caught in my squished and shortened intestines (my colon was surgically removed in 2002). I remembered that I’ve felt similar pain during colonoscopy procedures in which air is pumped into the intestines (to ensure the scope does not puncture them). (I usually choose not to be sedated during these procedures.)

I had to temporarily let go of my drive to make meaning of the pain in order to discover the actual cause of my pain, and subsequent relief.
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Living well with a chronic illness – interview on “Open Questions Podcast”

In this interview, Irina Almgren of the “Open Questions Podcast” asked questions to me and Andy McClellan about how we live with chronic illness. We discussed the obstacles of living in a society that pushes people to push themselves and ignore their bodies. We also talked about how the hyper-emphasis on “doing” in our society–on being productive all the time–meant that severe illness triggered crises of identity because we could no longer keep up at the insane pace that most of society runs at. At the same time, in letting go of “doing,” we found so much more about who we really are through “being.” In time, both Andy and I came to see our challenges in living with illness as opportunities to develop self-awareness, compassion and love.

Andy lives with chronic fatigue syndrome and writes an amazing blog called The Long and Winding Road.

You can listen to Part 1 here: OQ5: Living well with a chronic illness, Part 1 (download it) and Part 2 here: OQ6: Living well with a chronic illness, Part 2 (download it).

Milestones and celebrations

Two days ago I celebrated eight years of being hospital-free. As I wrote on my Facebook status update:

On May 3, 2003, I walked out of Georgetown University Hospital with a determination never to be admitted again as an IBD patient. I had been a “frequent flyer” at that hospital for almost 3 years due to severe Crohn’s colitis flares. Today I celebrate 8 years of being hospital-free. To my Crohn’s buddies and friends with health challenges: “Nothing is impossible” ~ Christopher Reeve

It is amazing to me that I actually was never admitted again to the hospital for IBD (inflammatory bowel disease). I was so terribly sick! I’ve written about the different causes and conditions that I believe helped me to recover, but the truth is, I really don’t know for sure. I found some combination of health habits that worked for me. And for almost exactly six years now I have been free of Crohn’s colitis. There are other milestones too: for almost three years I have been free of sciatica pain; for more than three years I have been free of migraine headaches; and for almost one month I have been free of chronic UTIs (gotta start somewhere!).

How do I celebrate such milestones? By eating lots of vegetables, fruits, and high-fiber foods! By thanking everyone who has been with me on my healing journeys. By appreciating the present moment. And by reflecting, at least a little bit, on what illness and pain have taught me.

I read through some of my past journal entries and almost exactly six years ago, I wrote the following in my journal:

Kitten Snickers (the pet name my sister gave to Crohn’s colitis) has taught me about life and death, as I have almost died from severe episodes. But Kitten Snickers has also taught me about love. When there was nothing else for me to hold onto — when I was floating in the moment to moment uncertainty of whether I would survive — when I was overwhelmed by pain and discomfort and feeling trapped — I kept coming back to the experience of love. It was something of a calling. A calling to be right there in the thick of the suffering and to make space within it. And the more I could rest there the more space there was. Sometimes I would close my eyes and feel like there was so much space in my body that I had expanded past the outskirts of the galaxy into nebulae. Only it no longer felt like me. It was the more than me that is love.

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Zen medicine – part 2

During a mindfulness retreat at the end of 2000, I caught a stomach flu and began to develop grave symptoms of inflammatory bowel disease (Crohn’s colitis). I could not sleep more than two hours at night because I woke up throughout the night to pain in my side, telling me it was time to go to the bathroom. I ate only small amounts of the blandest of foods and I was running to the bathroom all day and all night. I managed to get back to my aunt’s house in Connecticut and the symptoms continued to worsen.

My step-mother called me and told me that she and my Dad wanted to help me get to Indianapolis, where they lived, so I could be under the care of their friend, a gastroenterologist. So she set up a flight within just two days.

I had hoped for a good night’s sleep the night before I traveled but it did not happen. I slept only about two hours and started yet another day feeling exhausted. I knew it would be a particularly long day. The whole trip would last ten hours from door to door. But I knew I would only survive if I focused on my sense of peacefulness. I could carry nothing but that peacefulness. I also knew that I would have to rely on the kindness of strangers to get through the day. More

Every moment is so precious

A few weeks ago, Sally Massagee told CNN’s Anderson Cooper about how it was for her during the time in which she was had a mysterious disease. For four years, she did not know what was wrong with her body or if she would ever recover from the disease. Sally sought treatment from many doctors at Duke University Medical Center before she was accepted at the National Institutes of Health Unexplained Disease Program. She went through yet another week of testing, but this time it was not in vain. The doctors found that there were abnormal proteins in her body that were triggering her muscles grow uncontrollably. Sally’s tremendous overgrowth of muscle made it extremely difficult for her to even move her arms. Dr. Sanjay Gupta added that the muscle overgrowth could have eventually crushed her ribcage and organs. More

IBD or Cancer?

A question from one of the IBD (inflammatory bowel disease) support groups on Facebook went something like: “Which would you rather have, IBD or cancer? Someone said that cancer is easier put into remission than IBD and IBD never goes away.”

My response:
Whoever said, “IBD never goes away,” is wrong. The docs can’t find any signs of it in my body and that has been the case for 5 years now. Nothing is permanent. That person was probably having a hard day with IBD and my heart goes out to him or her. I think that everything we “get” gives us an opportunity to grow and increase our awareness, compassion, and love. The specific kind of ailment is not all that significant in the grand scheme of things. We can die and suffer from lots of different ailments, not just IBD or cancer. I did have a couple of brushes with cancer, which were not life-threatening. I also had a few severe flares of IBD that were life-threatening years ago. I got to face the existential issue of “I am going to die someday,” which made me more appreciative of everything that I normally took for granted. The experiences I had with heavy suffering from severe IBD opened my heart. I’m glad that all signs of IBD are gone from my body and yet I am also grateful for what IBD taught me — how to care for myself and have deep compassion for others.

Tips for IBD patients

Someone newly diagnosed with IBD asked me for tips on dealing with it today. Here was my response. These are things I did that helped me to cope and to heal from Crohn’s colitis. I have been in remission for over 5 years. These suggestions may not help everyone with IBD.

1-Practice mindfulness. It can help you to relax your nervous system and to develop more self-awareness. It can also help you to cope with difficult emotions. You could try at least 20 minutes of deep relaxation and meditation every day; it made a difference for me. Our nervous systems can easily become imbalanced through stress, which may worsen IBD. Stress doesn’t cause IBD, but it can exacerbate it. See: Psychological Stress in IBD: New Insights into Pathogenic and Therapeutic Implications, The Impact of Autonomic Nervous System Dysfunction on IBD and Effects of Mind-Body Therapy on Quality of Life and Neuroendocrine and Cellular Immune Functions in Patients with Ulcerative Colitis. Know your stress triggers. Managing my stress meant making lifestyle changes to reduce stresses in my life. Stressful jobs always exacerbated my symptoms. In the past five years or so, I have effectively managed my stress and doing so has also helped me feel overall improved well-being. Another blogger, Bob, healed from Crohn’s colitis and credits meditation as being key in his healing process. Bob’s blog: I healed my Crohn’s colitis. Mindfulness meditation and relaxation are not quick fixes and they may not help everyone with IBD to reduce the suffering that goes with living with IBD. More

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